All you need to know about endometriosis
Around 1.5 million people in the UK live with endometriosis. Learn more about the symptoms, diagnosis, and treatment.
Endometriosis is a common condition in which tissue (similar to that in your womb) begins to form in other areas of the body, most commonly the ovaries, bowels or pelvis.
It’s a daunting word to pronounce, let alone understand; but with 10% of women experiencing its debilitating symptoms, we must begin to spread awareness (1).
Endometrial tissue is still affected by the menstrual cycle, meaning it grows, thickens and breaks down every month. Not only can this be an extremely painful process, with inflammation and trapped blood, but it can also cause additional problems. Endometriosis can lead to:
- Blocked fallopian tubes – the growths can form over your ovaries.
- Cysts – trapped blood can cause cysts in the ovaries.
- Inflammation – affected areas can swell.
- Adhesions/scar tissue – this could make it difficult to achieve pregnancy.
- Bladder and intestinal problems
What causes endometriosis?
Unfortunately, the exact cause of endometriosis is unknown. Researchers believe that a combination of factors could contribute to the disease developing. Some of the possible causes are:
- Menstrual problems – for example, retrograde menstruation which causes shredded tissue to flow up through the fallopian tubes and into other areas of the body.
- Genetics – the condition can run in the family.
- Immune system problems – a faulty immune system could fail to destroy remote endometrial tissue. It is more common for women with endometriosis to have low immunity.
- Hormones – endometriosis responds to oestrogen, which is why many treatments attempt to block the hormone.
- Surgery – during abdominal surgeries, like a caesarean or hysterectomy, endometrial tissue could be wrongly moved.
Stages and symptoms of endometriosis
Endometriosis can be categorized into four stages:
- Minimal (I)
- Mild (II)
- Moderate (III)
- Severe (IV)
Doctors determine this by the location, amount, depth, and size of the endometrial tissue (2). It is important to note that endometriosis is not cancerous, and the stage does not determine the pain levels or symptoms experienced. Women who have the disease can encounter a variety of symptoms and intensity, while some do not have any.
Common symptoms include:
- Severely painful or heavy periods
- Irregular periods
- Deep pain or cramping during sexual intercourse
- Painful bowel movements
- Pelvic and lower back pains
- Bleeding in between periods
- Digestive problems
Endometriosis often has a significant impact on a woman's life and can also cause psychological effects such as depression, anxiety, and insomnia. Endometriosis UK recommends that you keep a pain and symptom diary before visiting a doctor to rule out other conditions and aid in quick diagnosis.
How is endometriosis diagnosed?
The path to a diagnosis can be long and frustrating, with an average of 7.5 years between the onset of symptoms and a confirmation (3). The process begins with a professional evaluation and one or several tests:
1. Medical history
Your doctor will record any symptoms or family history of endometriosis, as well as a general health assessment to exclude other conditions.
2. Physical examination
A doctor may perform a pelvic exam to feel for any cysts or scars behind the uterus. This can sometimes be uncomfortable as either two fingers or a speculum is inserted into the vagina while the doctor presses on your abdomen.
A doctor uses either a transvaginal or abdominal ultrasound to display images of your reproductive organs. Sometimes this can reveal cysts, but it is not the most effective method of diagnosis.
Receiving clear scans or blood test results does not mean that you don’t have endometriosis (4). The only definitive method for identifying endometriosis is a laparoscopy as it views the tissue directly. This is a minor surgical procedure in which a thin tube with a camera attached to it is inserted into the lower abdomen through three small incisions.
Usually, if minimal to moderate endometriosis is found, the tissue is removed in the same procedure. Severe endometriosis may require another operation.
New diagnostic techniques - mRNA sequencing
Recent breakthroughs have meant that endometriosis can now be diagnosed using a saliva sample, including the Ziwig Endotest.
How can a saliva test diagnose endometriosis?
Well, people with endometriosis express some of their genetic material (microRNA) differently. Over 97% of microRNA is detectable in saliva. The technique analyses multiple pieces of mRNA and uses artificial intelligence to assess whether or not the sample matches the endometriosis 'signature' to determine a positive or negative result with impressive accuracy. It can be used to detect all types of endometriosis, including complex cases.
This method will likely revolutionise the way endometriosis is diagnosed, however, it is not intended to replace imaging techniques. With a positive result, you might require further scans or surgery to establish the extent of disease and treat it. Any new technique comes with limitations, but it's an exciting breakthrough. We're watching closely — it holds great potential as a new way to test for conditions.
How is endometriosis treated?
Currently, there is no cure for endometriosis, but there are various treatments that could improve your quality of life. According to the NHS, the remedies are used to ease pain, slow the growth of excess tissue, improve fertility, or stop the condition from returning (5). Your doctor will discuss the different options with you and consider which is most suitable depending on:
- Main symptoms
- Whether you are trying to get pregnant
- Your thoughts about surgery
- Whether you have tried other methods
Having treatment is not always necessary for endometriosis, but understandably, most women want quick relief from the pain and disruption it causes. Common methods include:
1. Pain medication
Ibuprofen and paracetamol can be used as anti-inflammatories and to reduce pain levels. These are available over the counter but are not always effective for severe cases. It is important to talk to your doctor if you’re still in pain after taking painkillers for a few months.
2. Hormone treatments
Oestrogen promotes endometrial tissue growth and shedding. By limiting this hormone, the amount of tissue and pain can be reduced. Treatments such as the oral contraceptive pill, the implant and intrauterine system (IUS) can control oestrogen production; however, they do have various side effects that need to be considered. This method also temporarily reduces fertility, so it is not advised for those trying to conceive.
Surgery is typically for those with severe symptoms that have not been relieved via other methods. Firstly, a laparoscopy can be used to remove endometrial tissue to improve your fertility or ease some symptoms. If the keyhole surgery and other treatments are unsuccessful, then a hysterectomy (removal of the womb) can be performed providing that the patient has decided not to have any more children.
Endometriosis and pregnancy
Naturally, most women diagnosed with uterine disorders tend to worry about their fertility and future pregnancies. It is reassuring to know that endometriosis does not necessarily determine fertility; the two do not go hand in hand. Many women can achieve pregnancy with endometriosis, but it may be a more difficult process.
In some cases, the endometrial tissue can block the reproductive organs, or the endometrium does not develop properly. Removing cysts, adhesions or nodules through surgery can increase the chances of pregnancy. Reassuringly, once a woman with endometriosis becomes pregnant, the pregnancy is no different from usual (6).
FAQs on endometriosis
1. Does having endometriosis mean you are infertile?
This is a scary thought for young women, but as previously mentioned, endometriosis does not always have a direct correlation with fertility.
2. Will having a baby cure endometriosis?
While pregnancy will temporarily stop some of the pain that comes with your monthly cycle, endometriosis tends to recur shortly after the baby has been born.
3. Will having a hysterectomy cure endometriosis?
A hysterectomy is often the last resort to treat the condition and usually is quite effective in alleviating the symptoms, but it does not come without its risks. In some cases, when the uterus is not fully removed, multiple surgeries may be needed, or some of the pain might remain.
4. Do you get endometriosis from delaying pregnancy?
The cause of endometriosis is not entirely understood, but many people wrongly believe that not having children in their 20s will lead to the condition developing. Women of any reproductive age are at risk of endometriosis, but due to a lengthy diagnostic journey, most cases are not confirmed until 25-35 years old.
5. Does endometriosis go away after menopause?
Endometriosis may never go away, but for some women, it does improve after menopause. The condition needs oestrogen to grow, so when the hormone dwindles, it can ease the pain/symptoms. However, a small amount of oestrogen will still be created by the ovaries, so the condition remains present.
6. Does endometriosis only mean having painful periods?
While severe menstrual cramps are a part of endometriosis, that is by no means the only issue that women have to endure. The condition can be debilitating and affect everyday life. Other symptoms are painful intercourse, fatigue, abnormal bleeding, heavy periods, constipation and sickness.
7. Where can I get support for endometriosis?
Endometriosis UK provides access to local support groups and helplines, and there are various online blogs in which women share their journey with endometriosis so that sufferers do not feel alone.
If you are experiencing any symptoms of endometriosis, you should visit your doctor so that they can complete a comprehensive examination and determine the treatment options suitable for you.
- Healthline. (2020) Endometriosis. [online] Available at: https://www.healthline.com/health/endometriosis [Accessed 25/02/20].
- Johns Hopkins Medicine. (2020) Endometriosis. [online] Available at: https://www.hopkinsmedicine.org/healthlibrary/conditions/adult/gynecological_health/endometriosis_85,P00573/ [Accessed 25/02/20].
- Endometriosis UK. (2011) Endometriosis Diagnosis Survey 2011. [pdf] Available at: https://endometriosis-uk.org/sites/default/files/files/Endometriosis%20Diagnosis%20Survey%20Feb2011%20Report%20final.pdf [Accessed 26/02/20].
- Endometriosis UK. (2020) Getting diagnosed with endometriosis. [online] Available at: https://endometriosis-uk.org/getting-diagnosed-endometriosis [Accessed 25/02/20].
- NHS. (2019). Overview – Endometriosis. [online] Available at: https://www.nhs.uk/conditions/endometriosis/ [Accessed 25/02/20].
- Endometriosis UK. (2020) Endometriosis, fertility and pregnancy. [online] Available at: https://endometriosis-uk.org/endometriosis-fertility-and-pregnancy [Accessed 25/02/20].
- Rogers PA, D'Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.
- Endometriosis UK. (2020) Get support. [online] Available at: https://endometriosis-uk.org/get-support [Accessed 25/02/20].
- Jackson, G. (2015) Endometriosis: 20 things every woman (and every doctor) should know. The Guardian, [online] Available at: https://www.theguardian.com/society/2015/sep/28/endometriosis-20-things-every-woman-and-every-doctor-should-know [Accessed: 25/02/20].
- Stöppler, M. (MD) (2019) Endometriosis Symptoms, Causes, Treatments, and Prognosis. [online] Available at: https://www.medicinenet.com/endometriosis/article.htm [Accessed 25/02/20].
- Women’s Health. (2014). Endometriosis. [online] Available at: https://www.womenshealth.gov/a-z-topics/endometriosis [Accessed 25/02/20].
- Endometriosis UK. (2020) Pain & Symptom Diary. [pdf] Available at: https://endometriosis-uk.org/sites/default/files/files/Information/pain-symptoms-diary.pdf [Accessed 25/02/20].
- Thom, E. (2019) Private Parts: How to Really Live With Endometriosis. London: Coronet.
- Horne, A. and Pearson, C. (2018) Endometriosis: The Experts’ Guide to Treat, Manage and Live Well with Your Symptoms. London: Vermilion.